‘I will take what is mine with fire and blood. George R. R. Martin

I’m still trying to digest everything that’s happened in the last month or so…

Sometimes it feels like it’s all happening to someone else

And other times I feel like it’s happening to me over and over

Like a weird Groundhog Day movie thing

Things were so off leading up to going to Florida

That I feel like I’ve never really regained my footing

Maybe I came back to Toronto as someone else

I don’t know

Except it’s been fitting with the way my life has always sort of seemed to go

You know the saying:

‘If it wasn’t for bad luck I’d have no luck at all…’?

Right now looking back at Florida

It seems like a really bad nightmare

I was so sick

And I didn’t know why

The bruises appearing out of nowhere

And the blood

Well I won’t gross you out with the details

Suffice it to say

It was unpleasant

After returning and finding out about my super low platelets

It all seems like a blur

I had a very rare reaction to the IVIG called aseptic meningitis

Which essentially mimics meningitis symptoms such as the headache and neck pain

It eventually passed and I got through it with the help of some hydro morphine

It was frustrating to be in the hospital bc no one listened to me when I explained that I was only there because of the headache/neck pain and not for the low platelets

They didn’t understand that my platelets were a result of the Lemtrada treatment and kept saying but you had the last dose over a year ago

While I do have notoriously bad luck

For some reason I was gifted with an incredible hematologist doctor from St. Mikes

She gave me her email address

And responded to my many emails

And even contacted Humber to explain my situation and why I could be released

From the minute I met her

I knew she was different

She cared not only about my platelets but about my mental health as well

Truly not something I’ve often experienced

Even while being treated by ‘mental health professionals’

After leaving the hospital I was so bruised and sore from all the blood tests and I won’t even begin to explain the bacterial infection I picked up from the hospital

I had another blood test early in the week and then a follow up appt at St. Mikes later in the week

I tried to not obsessively check my results

And waited until late in the evening

My platelets had risen from 28 to 46!

While still nowhere close to being normal (150-400)

It seemed to be going up

I’m back from my follow up with hematology now

It wasn’t the worst case scenario I was imagining

Nor was it the ideal situation

Nope

It was somewhere in the middle

I have ITP

We don’t know if it’s permanent or not

We have to wait and see if my platelets continue to increase

The doc explained it as there are three possible scenarios:

1. I did the IVIG and I recover my platelets and ta da! The end

2. I did the IVIG and I recover some platelets but relapse and will need some sort of treatment

3. I did the IVIG and there is no improvement and will need an alternative treatment

I’ll have to wait and see which category I fall under

The real bummer from today is learning I will have to continue with weekly blood tests until told otherwise

For the record

In case you’re wondering

Or if anyone asks

I haven’t become a pro at the blood tests

It still is a big deal for me

And I still dread them

Despite this

I’m still here

I did some art

I sat outside with my dogs and the sun shining on my face

I listened to more audiobooks

This is my life

For right now

And I’m sorta okay with that

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‘Language is the blood of the soul into which thoughts run and out of which they grow.’ Olivier Wendell Holmes

Feeling speechless

I didn’t think this year could possibly get worse

The universe took that as a challenge

It got so much worse

I’m home from the hospital now

I did things this week that I didn’t think I would ever be able to do

I should feel proud

Instead

I feel resentful and saddened

That I had to do them at all

After two days of immunoglobulin infusion

My platelets are still low at 28

From what I remember, this might mean that I have Immune thrombocytopenic purpura (ITP)

Refresher:

ITP is a bleeding disorder where the immune system mistakenly destroys platelets

Platelets allow us to not bleed excessively

It seems like a really big fuck you to me

I hate blood and needles and anything to do with bleeding

And the universe said

Well, here ya go

I won’t know for sure until next week

But of course I’m thinking the worst case scenarios

I’m convinced I’m dying

I’ve never had that fear before

The universe laughed

And said ‘now you do’

I’m scared

I’m sad

And I keep thinking I just can’t take any more

But I’m scared

That the universe

Will take that too

As another challenge

And I’m just not up for it

‘Okay, you made me scared, you did what you set out to do And I’m not prepared, you really had me going there for a minute or two’ The Tragically Hip

Scared is different from panic

Panic is unwarranted

Panic is your body misinterpreting signals

Panic is reading everything as danger

Scared is a reminder of what we have to lose

Scared is a prayer on our lips

Scared is being alive

It’s okay to be scared

Sometimes it’s even expected

Sometimes I struggle to sort out in my mind what is ‘normal’ fear and what is my panic disorder

Yesterday I felt my heart beat fast and I felt panicked

Surely it meant something was wrong

Maybe I was bleeding in my brain

Maybe I was going to feel the way I did last week

Maybe I would receive bad news

Today is different

Today I am scared that my blood levels won’t improve

Today I am scared that this could turn into something worse

Today I am scared to miss out on anymore of my life

And tomorrow

Is another day

That I can’t be afraid of

Just yet

The Ugly Side Of Recovery

I’m one year and 3 months post round 2 of Lemtrada (the immunosuppressive treatment I underwent for MS).

This was probably the biggest and scariest thing I’ve done in my life

There was caution and risk involved

But I did it anyway

Because my desire to be healthy outweighed my fear

That doesn’t happen often with me

Countless times, I’ve allowed my fear to be in control

To sit in the drivers seat

To call the shots

For whatever reason

That time

I just didn’t

One of the possible side effects of Lemtrada treatment is:

‘Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple’

I think it’s something like 2% of Lemtrada patients can end up with it

Well I recently went away and while on vacation I noticed huge unexplained bruises.

Then came bloody stool

Some red spots

And a whole lot of anxiety and fatigue

Needless to say

My trip was a bit of a bust

Upon return I reached out to my Lemtrada nurse to explain what I was experiencing and she told me to get my bloodwork done

I did

And my platelets were 53

Normal platelet count is between 150-200

I really had to restrain myself from googling the fuck out of this

I sent my nurse a copy of the lab work

And bright and early this morning she called me

Seeing her name on my phone

I knew it wasn’t going to be a friendly call

She urged me to go to emerge at St. Mike’s ASAP

She was amazing at calming my already sensitized nerves down

So I got my people ready and we went

At emerge and after having to explain Lemtrada repeatedly, I had more bloodwork done and a rectal exam (that was fun)

After lots of waiting

Worst case scenarios playing in my head

And my constant companion of anxiety

My results were back

Platelets up to 87!

Not in the clear but an obvious improvement

With cautions about new bruising or headaches

To return to the emerge immediately

A little bit of good old fashioned fear: you could experience bleeding in your brain

Another blood test on the horizon

And an appointment with a hematologist

I’m headed home

Of course I’m scared

Because yet again

There is uncertainty

For example, what caused this all of a sudden?

What if it comes back?

What if I fall or cut myself?

What if I die?

Uncertainty and anxiety are like yin yang

They feed off each other

And it’s so fucking easy to slip into my old patterns

Fear, panic, sadness, wallowing

Then what?

It doesn’t change my potential outcome

But it does make this whole process that much harder

And why on earth would I ever want to make things harder for myself?

I refuse to allow this to make me a victim

Nope

Today I will do something that I don’t often do

Something my sister said to me

I will deal with this with a grace I don’t often possess

With strength and determination that I’ve not often felt

Gratitude that I often neglect

And I’ll just keep going

Because anything less isn’t an option

Not today anyway

‘Everybody Is A Book Of Blood; Wherever We’re Opened, We’re Red.’ Clive Barker

Today sucked

Hard

I arranged to have one of the Bayshore nurses come to my parents house to do my monthly bloodwork

Since I skipped last month

I was nervous before the day started

But I went with it

The nurse got here

I did the same old pee in the plastic cup song and dance

And then sat in a recliner to get it over with

I told her I usually have it taken from my hand

And that I have anxiety related to it

She was kind and all that

I didn’t have my rubber ball to pump to get the vein ready and blood flowing

But I tried other methods

She got the vein on the first try

I breathed a sigh of a relief

After the initial painful puncture

And then…

No blood

No blood came out

She tried a few times to get it flowing

Nada

She tried a different vein on the same hand

I pumped my hand manically

She got the vein

And still

No blood

I asked her to try my other hand

I was pretty shaky, sweaty and anxious at this point

She inserted the needle

And

No fucking blood

She said

I literally have the needle in your vein and nothing is coming out

We gave up

She recommended I try to go to my regular lab and see my usual homegirl

But of course

Because of my panic and near agoraphobia

I had been trying to avoid that

She left

With her empty vials

Apologies

Used needles

And unfulfilled lab requisition

I was left with my urine sample sitting on my mother’s coffee table in her living room

There wasn’t any point in sending it in without the blood

Three track marks and I’m sure ugly bruises to follow

I pulled my knees up and just started sobbing

I broke my no-crying-for-three-days record

Feeling sorry for myself

Everything is always so damn hard

Nothing seems to come easy

And yet

After all of that

I didn’t have a panic attack

Even pre crisis

A day like today would have likely made me have a panic attack

But today

Through the punctures, the pain, the discomfort, the crumbled hope and the anxiety

I didn’t have a panic attack

That’s my silver lining on this shit-tastic day

“We looked for the easiest way out: a separate reality.” ― Paulo Coelho, Veronika Decides to Die

My hair is falling out

My eyes hurt

And I’m trying to remind myself why I did this fucking treatment

This weekend passed by in fits of long naps

When I’ve been awake, I feel tired and irritated

This is the stuff no one tells you about chronic illness and the shit you do to your body to ‘get better’

I’m almost two months post Round 2

I did my blood work

With much greater ease

The first month of the next five years

There’s so many thoughts rumbling around in my head

And even trying to make sense of them in writing isn’t doing the trick

I went to the optometrist and while my vision hasn’t gotten worse she was concerned over my eye pressure and appearance of optic nerve

She said it didn’t have anything to do with my optic neuritis episodes

Glaucoma?

Being sent to ophthalmologist for more tests

I went to the group again on Friday

The topic was the difficulty in decision making

Funny since I’m struggling with this long term disability decision

I came home feeling understood

Something that’s always evaded me

It was a wonderful feeling

That I’m trying to hold onto

But it’s just out of my grip

Like the Banksy art on my arm

I’m reaching for it but it’s just passed my reach